Thursday, November 18, 2010

Watching my future run and jump

Earlier this week, I had the pleasure of meeting with another mom who has a child with Prader Willi Syndrome. This woman has been a lifeline to me in more ways than one since Olivia was born. When Livie was diagnosed and I had our first visit with the geneticist, at the end of the visit he asked me if I had any more questions. I only had one - did he know of anyone else in South Carolina who had been diagnosed with PWS? And could I talk to that family?

Lucky for me, he did. AJ was diagnosed at 8 months and is now 3. Her mom called me not too long after that conversation with Dr. Pai. I had so many questions for her. I was still in a daze, and many times over the past year I have asked her the same questions over and over again. She has never ceased reaching out to me, even when I absented myself from the world for a little while. I am so very grateful for that. She gave me some hope when I didn't have any, and she gave me some valuable resources that we would have never known about otherwise for quite a long time. Without her, we would probably not have found Dr. Miller for quite a while, and as a result Olivia has better care than she would have otherwise.

She saved me hours of research by passing along shortcut information... and she did it cheerfully and without ever making me feel obligated or intruded upon. It's a fine line to walk when someone needs help and she did it with grace, compassion, and an open heart.

As blessed as I am by all that, I am even more blessed to meet her precious daughter. Ayden Jane is so stinkin' cute, spunky, and funny. We told her she was a hoot, and she grinned up at us - "NOT hoot!" She totally got it. She knows she's funny. More than anything else, that gave me hope. For a child to be funny, they have to have an understanding of nuance and subtlety. It's a great sign of intelligence.

AJ is on the higher end of the PWS spectrum, and she's very much like any other 3 year old in many ways. She has a very strong sense of self, likes and dislikes, and was very polite. She did have some delays, but they seemed minimal and mostly speech related. Not at all what I envisioned for our life a year ago. The very best part of my day was Ayden Jane taking my hand twice - once as she walked down the stairs, and once while walking along outside. This really touched my heart. When Amelia was born, we snuggled constantly and she was rarely out of my arms. When Olivia was born, that was impossible. Even after we brought her home, to feed her required this odd position on my knees where she wasn't even held close to my body. One of my deepest sorrows was missing all that physical contact when she was a baby and wondering if we would snuggle and wrestle and play around with each other as she grew up. For some reason, the simple act of AJ taking my hand told me it was going to be all right.

My Favorite Post

"We are each of usANGELSwith only one wing and we can only fly byEMBRACING EACH OTHER "-Lucian de Crescenzo

About Us

It's three years later... we've been through another deployment, several TAD months of training and preparing for our 5th deployment (and the second YEAR long deployment). We've PCS'd to North Carolina where we met old friends from past duty stations and made new ones on our Marine Corps journey. And we're still unpacking, yet again!

6 weeks after my husband returned, we had the unexpected surprise of our daughter arriving almost 2.5 months early with a lot of post birth complications. Now we're getting used to our new "normal".

My husband just returned from what I now consider to be our 17 month deployment (if you count the months of special training in another city before hand) and we've unpacked and begun planning for our next move and... you guessed it... packing up again.

Ok, we WERE preparing for the deployment... now we're living it. And I'm more unpacked than I was!

We're preparing for a year long deployment, living in one city and traveling to another where my husband is in training for the next few months before he leaves. We've yet to fully unpack anywhere! This blog is for my husband, family and friends... and myself, so I can remember where I'm at! :)

PEACEit does not mean to be in a place where there is no noise, trouble or hard work. it means to be in the midst of those things and still be calm in your heart.(unknown)

Amelia in Azaleas

"I believe it to be a great mistake to present Christianity as something charming and popular with no offense in it....Wecannot blink at the fact that gentle Jesus meek and mild was so stiff in his opinions and so inflammatory in his language that he was thrown out of church, stoned, hunted from place to place, and finally gibbeted as a firebrand and a public danger. Whatever his peace was, it was not the peace of an amiable indifference."--Dorothy Sayers